Despite the immense and ever-growing need for physical, financial and emotional relief for family caregivers, research indicates the nation’s estimated 40 million caregivers still find joy in caring for their loved ones. But they also need help like never before.

“I’d like to point out that despite the challenges, there’s beauty in the fact that people find joy in caregiving,” said Eve Gelb, senior vice president of HealthCare Services for Senior Care Action Network (SCAN), one of the largest not-for-profit Medicare advantage health maintenance organizations in the United States. “We need to find ways to support caregivers so they can sustain their own health and prioritize their own needs while they care for their loved ones. Through education about the resources available, we’re getting closer.”

Gelb’s assessment reflects the Congressional passage this month and signing January 23 by President Donald Trump, of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act. The bi-partisan law directs the Secretary of Health and Human Services to develop and sustain a national strategy to recognize and support family caregivers in the United States. It also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government and others may take to help caregivers.

Results were released this week from the SCAN Health Plan Survey C which was conducted by Wakefield Research among 1,000 nationally representative U.S. adults, ages 65+, between November 28 and December 6, 2017, using an email invitation and an online survey.

The SCAN survey found that, from the perspectives of physical and emotional health, the implications of caregiving can be equally worrisome. Results show that, of senior caregivers:

• 82% have difficulty saying “no” to the job.
• 54% feel guilty about taking a break from their caregiving tasks to make time for themselves.
• 29% spend 40 hours a week or more caring for someone.
• 47% are concerned about the physical strains that comes with caregiving and 44% are concerned about the emotional strains.
• 44% are not confident that the person they’re a caregiver for would be able to find someone else to take care of them.

The SCAN survey also explored the financial implications associated with caregiving. Some 47 percent of caregivers report having to tighten their belts financially because of their caretaking responsibilities. Among those who have experienced financial strain:

• 34% have cut back on their own discretionary spending.
• 20% have used personal savings to provide care.
• 8% have accrued credit card debt to provide care.
• 5% have asked for donations or financial support from friends or family.
• 2% have taken out a loan to provide care.

And yet despite all of the statistics, some 86 percent of respondents indicated that their responsibility is a rewarding experience.

“SCAN’s survey underscores that while there are emotional and practical challenges, caregiving can be rewarding and that caregivers largely are devoted to the person they are caring for,” Gelb said. “Caregivers should be living their best life too, however we are seeing that they end up sacrificing their own wellbeing.”

Gelb said that because caregivers who are seniors are not confident that the person they’re a caregiver for would be able to find someone else to take care of them, it “implies that caregivers are not aware of the resources available to care recipients and the services that can be purchased or found through community resources. In addition, guilt and sense of purpose play a large role in not wanting to give up the caregiving role. Many of the challenges senior caregivers face can be alleviated through their community. Nobody faults a working mother for finding a babysitter for their child, yet for some reason, this sentiment is not extended to caregivers who need to find support. This survey cements that the way society thinks about caregiving for seniors needs to evolve.”

This is where the RAISE Family Caregivers Act comes in, though Gelb admits they have their work cut out for them. “RAISE is a step in the right direction for caregivers, and we know certain states have expanded family leave acts that help bring caregiving to the forefront, however significant strides still need to be made,” Gelb said. “This topic is also especially relevant as our society has becoming increasingly mobile. There is less encouragement for adult children to stay near their families to help take care of them as they age, leaving parents and older relatives to care for one another.”

Gelb went on to say that it was specifically those senior caregivers that SCAN had in mind when commissioning the survey. “While there is quite a bit of information available about the sandwich generation, this survey was conducted to get a better idea of the scope of this issue as it relates to caregivers who are seniors. As our society ages we will see the number of seniors caring for other seniors increase. In light of their dedication to their job, we cannot let senior caregivers continue to put their own health and quality of life at risk, as they deserve better and their loved one needs them to be as healthy as possible, too. It’s a double impact—the health of the caregiver and the health of those they are caring for.”

Then there are the financial obstacles. “Outside of the emotional and physical tolls, there are also financial burdens,” Gelb said. “Attention also must be drawn to the fact that, in a situation fraught with emotional and practical challenges, caregivers often don’t have the time, energy or resources needed to deal with the challenges proactively. Sadly by the time they realize they need it, it’s too late to get financial protection (such as long-term care insurance). Typically long-term care insurance should be purchased in your 30s and 40s, which means financial planning is an incredibly important aspect as we look to prepare for a future of increased senior caregiving.”

Gelb suggests senior caregivers look into the following resources that may already be available to them:

• Local communities services such as those offered through local health associations, churches and synagogues or other organizations.
• A geriatric care manager can conduct a professional assessment of you and your loved one to identify need. They can then connect the caregiver and recipient to local agencies to provide services and resources. “Something like getting nutritionally balanced meals delivered can lift a weight off of a caregiver’s shoulders,” Gelb said. Often Area Agencies on Aging can provide meals and other services. Click here for more information.
• Respite care provided in the home or in the community can give caregivers time to care for themselves whether for exercise, doctor appointments or important mental and physical health breaks.

“In the survey, 70% of senior caregivers found themselves feeling isolated as a result of their caregiving responsibilities,” Gelb said. “To this end, I find it unfortunate that folks are not availing themselves of community resources such as adult daycare, health professionals and support groups.”

In a recent blog post, “A Study Of Family Caregiver Burden And The Imperative Of Practice Change To Address Family Caregivers’ Unmet Needs,” Health Affairs highlights the dementia caregivers’ perspective on the challenges they face, and identifies resources caregivers use for support.

A peer-reviewed non-partisan journal, Health Affairs was founded in 1981 under the aegis of Project HOPE, a nonprofit international health education organization. The journal explores health policy issues and promotes analysis and discussion on improving health and health care cost, quality and access.

The Health Affairs website notes that the journal reaches a broad audience that includes: government and health industry leaders; health care advocates; scholars of health, health care and health policy; and others concerned with health and health care issues in the United States and worldwide. It’s “articles are cited by U.S. administration officials, U.S. lawmakers and ministry of health leaders around the globe. Members of Congress from both sides of the aisle reference Health Affairs in drafting legislation.”

Health Affairs reports that an estimated 15 million family caregivers in the US provide unpaid care for someone with dementia. “Despite the fact that the physical and emotional toll on family caregivers is well-documented, little has been done to integrate caregiver support into the routine care of dementia patients,” Health Affairs reports. “Poor caregiver well-being may not only matter for the patient and caregiver, but for health systems’ bottom line as well. Caregiver burden and fatigue exacerbate the dementia patients’ high hospital and emergency department use. In fact, over five years, the average cost of care for a person with dementia was found to be more than 80 percent higher than the cost of care for a patient with heart disease or cancer. As the shift to value-based payment structures accelerates, understanding the root of these high costs and adopting strategies to mitigate them must become a priority for risk-bearing health care entities hoping to meet quality care standards and remain financially viable.”

To this end, the Center to Advance Palliative Care (CAPC) and the Gary and Mary West Health Institute (WHI) are developing courses and resources that assist the patient’s health care providers in supporting and educating caregivers to help them care for their loved ones with dementia. According to Health Affairs, the training will include how health systems can identify people with memory loss, how health care providers can assess and alleviate caregiver burden and how health systems and providers can operationalize best practices in dementia care.

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